"WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)

"e-Patient Dave" deBronkart is an advocate for patients being "E": empowered, engaged in their care, equipped, enabled, educated, etc. As described in his talk from TEDx Maastricht, he beat a near-fatal cancer, supplementing his great medical care by using the internet in every way possible.

Today, as blog manager and volunteer co-chair of the Society for Participatory Medicine, he has studied the social, technical and sometimes political factors that make healthcare ignore the potential of patients contributing to their care.

In his TEDTalk, he quotes senior physicians who have said for decades that patients are the most under-utilized resource in healthcare.

Why is that? How did it get to be that way? Is change valid? Why now, and not 20 years ago? And what can we do about it?

Watch the talk, and come back to discuss. *Your family* will be affected someday.

ADMIN EDIT: e-Patient Dave has requested that we keep this conversation open for 1 week. After 2pm ET July 27, he will periodically check in to answer questions and respond to comments.

Jul 27 2011:
If you have a bunch of kids on a playground and you don't TELL them to do whatever they want, they will stick to very specific activities or ones they saw before.
If you have a bunch of patients and you don't TELL them to ask questions, tweet each other, talk about their concerns, etc. - making a "safe zone" for patients - they will follow whatever the person ahead of them did. (see also: reports of people following the white lines on a road, rather than the path of the road)

Jul 27 2011:
Whitney, another "thumbs up" - create a "safe zone" for patients, giving them PERMISSION to go crazy :) talking to others. My physician, Dr. Danny Sands, encourages other docs to break the ice by ASKING "Have you looked up anything medical online?" He says it's like introducing questions about drug use and sex so the patient knows the topic is not off the table and he's willing to discuss it.

Jul 27 2011:
Ken Robinson is a very smart man! ;)
It was traditionally VERY disgraceful to question someone's statements in front of them. Now we are asking people to do so for the greater good. Quite a change for the rule followers of the day.

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Jul 27 2011:
I think following the person ahead of you without thinking first is awful.

I agree with you on the discussion front. When facing bladder cancer as a family, we turned to a very small message board community of patients and practitioners all swapping support and interpretation of results/outcomes among one another. At times, I needed the other daughter-caregivers to educate me. At times, I needed the patients to educate me. At times, I needed the practitioners to educate me on making a decision or understanding a finding. The forum has now blossomed and formalized to be more helpful and more robust but it was an eye-opening moment for me to see that people WOULD come together when they needed it most.

Jul 27 2011:
> We shouldn't be divided into patients and doctors fronts.

Exactly! I'm volunteer co-chair of the Society for **Participatory** Medicine - see the description at the top of www.ParticipatoryMedicine.org - "a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners." It's about the collaboration, the partnership.

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Jul 27 2011:
My MD, Dr. Danny Sands, is one of those who prefers proactive patients. ("E-patients: empowered, engaged, equipped, enabled, educated...") But many docs prefer passive. How could things have evolved that way?

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Jul 27 2011:
A doctor I work closely with is fond of saying that these days, he's everyone's second opinion. Google is their first. Patients are coming in with computer print-outs of diagnoses they think they might have, so that, on top of having to discuss with the patient their condition, the doctor also has to spend 10 minutes of that 15minute slot convincing the patient that they don't have the thing they found on the internet. There's a downside to "empowered" patients when we don't have to the tools to properly diagnose and care for ourselves, and I think this sort of behavior actually comes as a result of patients wanting to get a jump start on their very short, very stressful doctor's visit.

Dumb questions are dumb questions and always will be. Do we tell patients to just shut up? Not gonna happen. (It may help to think about it in pediatric terms: do docs want parents to stop trying to understand their babies' conditions?) I say no; the solution is to enable, train, empower, teach the patients.

Jul 27 2011:
I think the docs just got used to patients being passive, thus the family of the patients took note, continued the trend and the docs continued their part. Ditto Nafissa. My mom screamed and kicked and that is what I do.

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Jul 27 2011:
I also see your point Dianna, especially your last sentence; In my country I know that I have 10 minutes with my GP when I make an appointment. The way these appointments are scheduled are structured in a way to fit you out with a lable as soon as possible.
A specialist has a bit more time, but by the time you see him or her you have been living with your health complaints or illness for weeks (or months) while waiting for your appointment. Ample time to have a look online to try and make sense of what is happening to your body. It is not a hobby to visit dr. Google. It is done because you are being scared, confused and worried.
It might help if my GP when referring me would point me in a direction of solid good information about my condition or complaints. Even if my complaints are not yet properly diagnosed. Aknowlegde the fact that I probably will go online, and guide me.

Jul 27 2011:
I agree with Ragna, and would add that doctors may feel undermined by the internet, so feel a need to be even more assertive than they did before (if that's possible). They may also know that many patients, particularly more educated people, seem to trust their doctors less than they used to - there has been so much publicity about doctor error and conditions that originate in hospitals, it's not surprising that people are wary.

There's an important distinction here. In one view, docs are trained in at least two different things: medical FACTS and medical THINKING. As I mentioned in my talk, my PATIENT COMMUNITY had facts that many oncologists don't. But that doesn't make the patients oncologists!

It's no longer realistic to expect anyone to know everything. More than 3,000 medical journal articles are published every day now, and besides, physicians are increasingly pressured to see more people. (In the US, the average family doctor has about 2,000 patients now! Imagine how many conditions s/he must manage.)

Jul 27 2011:
i think demographics are changing as culture is for (e) patients as in empowered patients. a lot iot is in the open already, a lot is not yet. things will change in this decade, and technology will boost things in an exponential way
Many docs like pro-active pat, but often they find inaccurate info on the web. as HC institutions we have to look in the mirror and clear things in our own "home" first, by putting it online in an understandable way, in a findable way, in a timely manner..

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Jul 27 2011:
nope worldwide. More and more people grew up with using a mouse, used to asking for things they want, not so in a "waiting" position then a lot of people receiving HC nowadays.. Don't you agree ?

Jul 27 2011:
Nafissa, you're absolutely right about patient empowerment. We're entering a new phase of engagement, whereby it's essential to an individual's good health to be involved in their care and the cost of those services. i've worked in health care for 25 years, and there are several types of doctors and patient segments that run the spectrum of engagement.

Jul 27 2011:
Nafissa you are very right with " this is something needs to be tackled from both sides: how we educate and train our doctors & how we encourage and educate our patients." I have way too much experience with Dr's completely disrespecting how very MUCH I know about my very complex case & preferring to diagnose something 'easy" they "know" & can be sent away medicated... Patients DO need to be educated & empowered--because no one can really know how a patient feels but that patient! IT USED TO BE you went to a Dr & then TOLD THE DR how you feel. For many years now..you go to a Dr, that Dr reads lab tests that may not even be YOURS...& then tells YOU how you feel...often missing the boat altogether...Patients who are mostly NOT trained in knowing how their own body functions go away believing what the Dr said...sometimes relevant sometime not..& usually being medicated...

Jul 27 2011:
In my experience, it's not just the patient, but the patient records that are underutilized. During my last three ER visits, all because of kidney stones and infections, the ER doctors largely ignored both me and the file and tried other diagnoses before treating the cause of record. The kidney ailment was easily verified by ultrasound, but the doctors wanted to check my gall bladder and non-existent appendix. One even accused me of being an alcoholic and tried to diagnose me with pancreatitis.

Jul 27 2011:
Kitty, if I could hit thumbs-up 12 times on this, I would. You're right about the patient records. In fact the vast majority of HC in my experience has little to no clue, day to day, of how to make use of the medical record. MOST records contain outright errors - one of my x-ray reports identified me as a 53 year old woman!

Jul 27 2011:
I thought electronic recordkeeping would help, but one of the nurses told me that, in this very new hospital, they had compatibility issues between the palm-top devices they purchased and the recordkeeping software, so they can't even use the portable system. Someone bought a fancy barcode reading system, and it is so cumbersome to use, it wastes time.

Jul 27 2011:
Yes yes, Kitty: as electronic records start to roll out in healthcare (a truly massive industry) there will be some LONG periods of adjustment. It took the banking industry 10+ years to get it right - some of the early websites were comical. Healthcare is bigger, and the data is far more complex, so it will be IMPORTANT for us to keep an eye on our data - and our moms' data, and our kids' data..... PATIENT ENGAGEMENT.

Jul 27 2011:
Just like it goed for some doctors and nurses : listen to what's needed. This goes for industry as well, a lot of push things hit the market that nobody asked for, but is send and showed to staff and administrators. Then brought into practice and not being used. so start with listening

Jul 27 2011:
And it took 2 months to get them to fix it - they're not accustomed to patients pointing things out, and not accustomed to LISTENING to patients. It's all part of the same cultural question in this conversation: WHY are patients under-utilized?

Jul 27 2011:
Hey Dave -- my feeling is, this situation came up, in part, because it's just really hard to start the conversation about data with your doctor. Neither patient or doctor is comfortable with this yet; I know I'd have a hard time knowing where to start. Can you share some strategies for starting the conversation about data with your own physician?

Jul 27 2011:
I agree, Shawn, patients became complacent - like a child in a classroom. Doctors became the teachers and we became the students. We didn't ask questions or poke around for more information in an effort to not be disrespectful to those in the field. Similar to what happens in some religious communities and practices.

Jul 27 2011:
I also think data and awareness has made us more complex and complicated. You used to call for the doctor, they triaged things and we all went on about our agrarian lifestyle. A patient like myself, with asthma, wasn't educated on lifestyle changes to improve health...prevention didn't really exist (ie: don't play with dust bunnies). Diagnostics and the rapid pace information flows at now are impressive. No single person can stay on top of it, so we need to re-educate people/society to embrace the ability to say "I don't know but I'll look into it"

Jul 27 2011:
I agree as well Whitney, and the relation that we pay homage to people held of high esteem like doctors, clergymen, and government officials that surely wont do you wrong makes us lay back, even when red flags are sounding off everywhere.

Jul 27 2011:
I'm a designer and I see this issue in the medical area from a design point of view. I ask myself (as a patient) questions like "Why not making that clinical history more usable for me?" "Why *my* medical information is just useful for the doctors?" "Why aren't we more involved in the decisions about our health?". If we -the patients- are the source and the end point of the decisions that doctors make based on our information, why can we be part of that system?
Designers and doctors can work together in order to think of a new paradigm for the healthcare service!

Jul 27 2011:
Dave,
I have a lot of thoughts about the necessary and essential transition we're experiencing now.

1) Culture - away from he "Dr. Welby" system where one person knew all. For complex and chronic illness it takes a team of people working together - not one individual.

2) Physician training - reading Siddartha Mukherjee or Atul Gawande shows how the "physician centric" system developed. Changes are in progress and as a rule, are we finding younger physicians more willing to work with their patients? I hope so.

3) Empowment - we see the role of advocacy in the breast cancer movement, starting in the 70's. We also see how it can go overboard when emotion overrides evidence. I can't stress enough how deeply I encourage women to seek info, ask, ask some more, and learn. If we aren't engaged in our own health, how can our docs give us their best advice?

4) Portable info - check and double check. Agree on errors. I found them on bills, in reports, in a lot of places. People check their bills but not their medical records?

Jul 27 2011:
agreed +100 !
Add to that the ambition that we i.e. took at Radboud University Nijmegen Medical Centre to embrace patient, family and informal care INTO then HC team, and we will have a eCo system in stead of an eGo system ;-)

Jul 27 2011:
hat's why i am so glad that we were able to give Dave a stage and our friends here at TED picked it up. This truly IS changing HC at present We have had numerous requests for the video, and contacts and/or vision behind our REshape (www.radboudreshapecenter.com) steps. Not only in or own University Hospital people are using TED vide's (like Simon Sinek's or Daniel Krafts' or Dave's to address needed change. The power of TED for healthcare is awesome. Shift STARTS to happen Jody ! (r)evolution coming up !

Jul 27 2011:
I once had a doctor who would answer any question... if you could ask it. He ran in and out of the room so quickly he was sometimes gone before I came out of "wait" mode and into an active analysis. I finally dealt with it by planting myself in front of the door as soon as he walked in. Once he COULDN'T leave, we were able to actually discuss problems.

I understand the pressures on him, but why should this be necessary? Shouldn't the process start with an assessment and move forward from there? Should an assessment be "Well, she's upright and breathing, she can't be too bad. Next patient!"

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Jul 27 2011:
You are correct Nafissa, patients do trust the doctors too much. Just think if Dave had not done any research. We would not be here today speaking with him! You may not have to be a skeptic as much as just ask some questions.

Jul 27 2011:
Less than 5 minutes ago: Sadly this is very true my mum passed away from Cancer 15 years ago. SHe knew something was wrong and the doctors kept telling her that is was nothing to worry about. She went to several doctors and indeed trusted them even though her gut feeling was that something was clearly not right. If only she had the online communities back then that we have now. It would have probably empowered her to speak up, voice her concerns and ultimately would have saved her. SO I truly believe it is emportant we help patients feel like they are worth listening to.

Jul 27 2011:
Absolutely. I'm sorry about your Mum, too. How can doctors determine someone's treatment if they don't listen? It boggles the mind, doesn't it? But I know how often this happens. I'm talking with a 38-year old, recently diagnosed w/rapidly developing cancer, who PUSHED and argued for a mammogram because she felt "something was wrong." That persistence, that argument probably saved her life.

Jul 27 2011:
Thank you, you are too kind. I think my mum's story is one amongst many sadly.
I think in some bizarre way there is still some sort of 'tabou' between the patients and the doctors, and even between patients sometimes. This is why I think 'anonymous' online communities could potentially be life saving as people are more relaxed to talk honestly about what they are feeling and where and what exactly they think is wrong. This is especially the case with 'non-commercial' deseases, the ones ones is to 'ashamed' to talk about.

She definitely did the right thing in pushing, it is her life after all, she is fighting for.

Jul 27 2011:
Like the "unspoken" best practice we all adhere to within #hcsm - if you are an office that won't email with patients (and hopefully you also tweet/text/etc) for appointments, refills and labs - then we are moving along to the next office that will.

We, as patients, need to do the same. If you aren't getting what you need from your practitioner - FIND ANOTHER ONE. Create the demand for better healthcare. The pack will follow.

Jul 27 2011:
I agree that patients don't always prepare their information, and don't always speak up. But clinicians don't always listen, and don't make time or room for the patient to ask when the patient is ready. For example, a serious diagnosis is usually greeted with shock by the patient, and questions are only formulated much later. Is there a handout from the doctor, including written information summarizing the condition, treatment options, prognosis, and resources for help? In the hospital setting, one of the best resources for this is the medical librarian. Some forward-thinking hospitals are including their librarians in the team, as they can follow up with print information, websites, support groups, etc. when the patient is ready.

Jul 27 2011:
I think it starts out with your starting position. Patient and physicians need to share and work together. It is like being on a climbing wall. You need someone to check your equipment, and secure your line. Though your role might be different, your goal is the same.
The sharing part is the part that needs to be taught. Taught to the workers in healthcare ánd to patients.

Jul 27 2011:
It is very common for a physician to think they know much more than the patient, but things are changing fast. With medical knowledge expanding exponentially, access to it on the internet, and especially with patients having access to each other, I believe we in the health care system have to change the actual system structure of how we care for patients and each other, and include them (actually ask them to be invited) on to teams and work together in a systems approach.
I believe it is the structure of our individual physician practice and the hospital hierarchy and vertical department system structures that cause the patient to be such an underutilized resource.

Jul 27 2011:
very well considered Bruce - thank you. The speediness of medical service is really a large piece of the imbalance it seems to me - A buddhist teacher put it this way 'Speed is the enemy of mindfulness. The antidote is being appreciative and observant of life's every detail.'. - Sokyam Rinpoche. This is hardly available in the 15 minutes generally provided.

Jul 27 2011:
I don't think of myself as an expert on medicine. I am an expert on ME, and on the experience I had with a particular illness. And as an expert on me, I want my clinician to consult with me, not dictate at me.

Jul 27 2011:
I think one contributing factor to patient dis-empowerment are the constraints that our insurance system puts on the time that doctors can spend with patients. There's very little time for doctors and patients to really talk!

Jul 27 2011:
Lindsey & Dianna, this "insurance constraint" issue is exactly why concierge medicine (direct pay, unlimited services for a flat rate) is coming back into fashion. The more expensive insurance gets, the more people are saying "screw the system." And as a child of the Sixties, I have no objection to that. :)

Jul 27 2011:
AND, btw, concierge medicine is no longer just for the rich, e.g. $10k/month. I know a group of docs whose members mostly charge < $150/month for unlimited office visits AND most prescriptions are free, bundled into it.

Aug 10 2011:
What community is this membership medical located? I would like to study it. I pay more than that per month for insurance. I'm blessed to be able to afford what I have chosen. Do you think it provides high quality care? Would LOVE to learn more.

Jul 27 2011:
Agreed, Dianna - insurance is a very limiting factor. But the point of our question here - why are patients under-utilized - was true 40 years ago, before insurance started running healthcare. Puzzling, eh?

Jul 27 2011:
What does that mean Diane, TIME to talk? Is that why they move so fast and act so distracted and you remember the things you should have asked after you left the office? Is that on purpose?

Jul 28 2011:
Tracie, re "remember the things you should have asked after you left" - e-patients commonly tell each other to write those things down BEFORE you get there. In my case, I send them in by email before I even go there.

The cancer described in my video was discovered during a routine annual check-up. I had prepared for that physical by sending my doctor a note describing the 12 things I wanted him to know about. Reading is faster than speaking; and we took care of some so quickly that they consumed NO time during our meeting.

He says he LIKES it when people send their "agenda" ahead of time, because he has his own agenda, too, so it lets him prepare for the meeting better.

We do this with other professionals, or in day-job meetings; why is healthcare so backwards? C'mon, let's modernize. :-)

Jul 27 2011:
Indeed - This speedup is really one of the key problems. I posted this quote from a wise teacher in another conversation - Mindfulness being - paying attention to what is truly happening - on many levels... "Speed is the enemy of mindfulness. The antidote is being appreciative and observant of life's every detail." Doctors could also learn to be trained in the techniques of listening and responding in the most appropriate ways - during medical school. - and the ethics involved in giving this kind of attention. There are many fine doctors out there!

Jul 27 2011:
As HC institutions we have to lister very very good to what e-patients like Dave tell us. THEY are the experts in HAVING a disease 24/7 and have the experience of suffering from it. HC pro's know how how to diagnose,treat, and may be even prevent it. Having it is a different story.

Jul 27 2011:
I believe that the patient is the most under-used resource in healthcare because doctors and other health professionals maybe believe that we (the patients) don’t know anything about medicine or different healthcare problems. It’s a sense of I have the degree that says this is what I studied and you don’t so there is no way you could know anything about this kind of thing.

Jul 27 2011:
So, John, these are indeed huge issues, and I'm not expert in any of them - weightier bloggers than I am continue to thrash this. To me they're legitimate hurdles BUT THEY ALL PREVENT US FROM MOVING FORWARD, so I want us to get past them.

2. Cost: the HITECH portion of the US stimulus bill (ARRA) provides $40 billion of incentives and rollout funding. As you may know, tons of work is going into this. At first there are incentive payments; 5 years from now there will be penalties for providers who don't do it.

Mind you, all of that applies only to government insurance payments. Providers who don't accept government insurance are unaffected.

3. Security: yes, lots of people are discussing this. The bottom line seems to be that data breaches happen all the time already, including on paper - last year a Mass General employee took a bunch of work home and left it on the subway car. This is a valid issue but I believe it shouldn't keep healthcare back in the pre-electronic era.

I am among the bloggers and blog readers that thrash those issues on a regular basis. I tend to agree with your analysis, although I can point you to many who would disagree. I asked the question because I wanted to test a knowledgeable and well informed patient for responses.

My experience has been that being a well informed "medical shopper" is not very popular with the providers. You are doing a great thing by building empowerment, but we must also figure out how to meet the expectation for complete record delivery in a secure manner - and then get all those who feel you are only the "specimen" (or perhaps specimen container), to agree on the ownership issue. A complete record crosses many systems and providers who must all "buy in" in one way or another.

There is no doubt we have the technology to enable delivering at least most of the data to the patient. The problem will be lack of sufficient motivation (HITECH Section 170.304(g) is woefully inadequate), the complexity of assembling a complete record, and the perceived risk in the medical and legal community. We must work at both the technical and legal levels as well to be able to truly "give you the data".

Patient empowerment is a god thing. I have shared your Ted Talk with many in the medical community to help them understand why patients should be empowered and allowed access to their data since I ran across it in June, but, unless we have popular opinion on our side, the barriers will remain for many years,

I agree about providers not being thrilled with the idea that consumers/patients might go somewhere else if they can easily do so! They also (as I'm sure you know) strongly resist publication of each individual hospital's probability of accidentally killing patients, hospital-acquired infections, etc. I say, if my daughter or wife is going into the hospital, she and I have every right to know which hospitals are safer.

And, I say, re data quality, Let Patients Help there, too. My primary physician points out that patients (and their families) can be a second set of eyes. (What good is data that's been put in a system wrong? Or on paper? Let's proofread, within our skill set.)

Re popular opinion, well, that's the work we're doing. I have the fun of talking to physicians and policy people as well as patients, and there's a growing community of patient advocacy organizations.

Jul 28 2011:
Hi Dave,
You passed muster very well. Your primary phys has it exactly right. I think providers are somewhat bothered by the idea of consumers going elsewhere, but I find their motivations and comments to be all over the map. We have made progress from a comment I heard about 10 years ago from one CIO who said "I'll allow third parties to access my data when they pry it out of my cold dead hands." In his defense his argument was purely based on security (and quality) of the data for the patients. Some I talk to often speak of their "work products" and getting paid for their "value add". These people I find hard to deal with.

I don't have a blog so you are much more likely to find me posting comments and questions on other people's blogs. I spend most of my time in dark corners writing technical papers and white papers trying to move the technology along. I actually avoid the very issues I spoke out on here for what I will term "professional" reasons (read as I don't want to make the wrong people angry). In this case you moved me to speak up with your excellent and rational TED talk and this discussion.

The great news is we are making slow but steady progress toward your goals. My belief is that we must make this a mandatory responsibility of the payors, but I also believe the path to success will be to get them to agree that the investment will, in the long term, make them money in the form of better outcomes and lower cost for those outcomes. It's a tough sale though. Please keep up the good fight on the awareness front. We'll get them plumbing in place soon enough, but we must overcome the belief that others might know best when it comes to our personal health care decisions.

Jul 27 2011:
Question: Do any of you know of any patients who HELPED their doctors by bringing useful information to them? There was one such story in Time last winter - a doc wrote that his patient brought printouts that helped him make the right diagnosis faster. You?

Jul 27 2011:
Hi Dave, Great topic. We see all the time in our online support communities--particularly in rare disease communities--the references to patients informing their docs of useful information that resulted in better outcomes for the patients. Joyce Graff of the Boston, MA-based VHL Family Alliance, an advocacy group for a rare genetic disease, definitely is one person I'd cite. (Her org has online a printout called, "8 Ways to Help Your Doctor Save Your Life http://www.vhl.org/press/presskit/)

Jul 27 2011:
Dave, Thanks. And I'd like to add that those interested in online patient communities should go to your blog at http://epatientdave.com/communities/ to browse--and add to--your growing database of patient communities. You explain it better than I can, but we see all the time that patients draw from support groups not just clinical information and practical advice that they can use in managing their diseases, but they draw emotional support and encouragement too, which is like fuel for empowerment.

Jul 27 2011:
As I said previously my mum did this and was determined to do it but all her efforts were ignored. I really hope this no longer happens, or less so as I imagine that patients are somewhat more informed today than they were 15years ago

Jul 27 2011:
Toni, I've heard many stories like your mum's. Sad. I very much hope that the "Let Patients Help" message will spread like wildfire. WE NEED TO CHANGE THE CULTURE so doctors realize patients CAN bring useful information to the table.

Jul 27 2011:
I informed my doctor of a much better iron supplement than he prescribed for me - sending a link to Hemaplex - which is supplement , non constipating and preferrable for getting ferretin levels up. He was agreeable and even grateful to know about it. this is small but worthy.

Jul 27 2011:
Great, Jenna! My doctors too, at Boston's Beth Israel Deaconess, have an open mind about supplements and alternative treatments. It's very participatory and empowering: they figure if we the patients feel that something is helpful, and there's no particular reason to go against it, then why not go for it?

Jul 27 2011:
All patients bring useful information to their physicians... yes, all of them - themselves the data about themselves contributes to every diagnosis.

If you consider treatment frameworks like a map for a given disease, built with the medical body of knowledge, (a la google maps - where road signs are decision points / probable outcomes), and you're asking which patients have contributed to the map... about 7% (I wish I had a good reference for this number)... the number of patients willing to participate in clinical trials and studies.

This topic is subtly tricky because "signal to noise" is challenging. Small N's (trial sizes), the placebo effect, and sheer system complexity all serve to confound the message. I'm generally a believer that more solid information is better than less, but Daniel Arielly makes an interesting system cost case for using placebos.

What framework could propel the "Patients can help" framework forward but protect it from itself? Beyond tools for just discussion, tools to manage signal to noise. Assembly is a useful first step, but filtering, resharing, perhaps conducting network designed clinical studies? Would a well defined collective voice sway more cooperation from the medical community and expose gaps between how physicians treat themselves versus their patients (http://www.medscape.com/viewarticle/740626)?

Coming back to your original question, I've heard of many prescription correction instances, like potassium supplements when taking a non potassium sparing diuretic.

Jul 27 2011:
Great additions, Malcolm. Thanks! Yes, my primary (Dr. Danny Sands) often says in his talks that he's the expert with the medical training, but the patient is the one with expert knowledge about their own body.